Thursday, November 17, 2011

Life is GRAND

WOW! Just wow. Hello world, hellooo internet.
I have been without internet for almost 2 weeks, which seems like FOREVER. I'm hanging out at a Starbucks in St. Helens waiting for my dogs to get groomed. Thankfully because they have wifi I can connect with the world at a higher pace. Waiting for my iphone to load blogger without wifi is hell.

So let me update you real quick on the happenings of my life.

I MOVED! Mo and I moved all of our stuff into the new house a week and a half ago. It's been so crazy. We were sleeping in one of the little rooms downstairs until our room was done being painted. But it is now, and we have moved into our new digs. It's like 3 times as much space! It's been so fun setting up our space. Of course neither of us can wrap our heads around how big it is in there. The baby pups haven't seen it yet. My parents are still moving out of the other house, and are keeping the dogs till they are with us in the house. Mostly because with Morgan gone at work all day, it'd be really hard for me to take care of them. I'm so worn out, and now I have stairs to confront. UGH! I've been doing pretty good, I take breaks if I need them, but even then I'm out of breath when I hit the top.


Morgan is gone for the next 5 days. He's visiting family and friends in Sacramento and San Jose with his brother and parents. I'm using this valuable alone time to set up our room, and hopefully (fingers crossed) PAINT. I haven't been able to in a while with all my weird health stuff, and the moving thing. But NOW I have all the space, privacy, and time to finish this painting - and FINALLY get it to the person who paid me for it in advance. I feel like a total shit because it's taken so long. I have it all planned out, and now I have the kind of set up that I needed to get it done. I LOOOOVE IT!

Anyways, I am on a 5 day run of Prednisone to give me a little boost. It's just the boost I needed too. The last 2 weeks have been so stressful, and I had to use all the reserves I gained in the hospital for moving. I will probably go into the hospital the beginning part of December, so I can be home for Christmas. WHICH IS GOING TO BE AMAZING!!!

Super hungry now, so I'm gonna go get some food with my pal. She gave up her whole day of leisure so that I wouldn't be alone on this trip. She's a sweetie!  ;)

The only way for me to communicate is through facebook and my phone, but obviously most of you don't have my cell number. Duh! But my facebook is open for business.



p.s. please pray that I get internet soon!!!!!!

Tuesday, November 1, 2011


I am officially HOME! I got out of the hospital on Friday, and was home for Halloween. It was the first time in 2 years that I was able to be home for Halloween. :D Not that I did anything particularly exciting, but it was one less holiday spent in the hospital.

Very exciting stuff people!

We are getting ready for moving. After 8 years in this house, I can't believe that we are finally getting out of it. I love a lot of things about this house, but it's been pretty cramped for the last few years and I'm getting so tired of it. Living in a small room with another pack rat, is just horrendous. Anyways, while babe is at work I'll be packing up as much as I can.

Today I have the unfortunate task of doing our laundry. My least favorite job EVER. Actually, no... cleaning out the fridge, and pulling hair out of the drain top that. But I'd literally puke if I did those things, and no one really wants that. Thankfully!!!

The house is freezing and all I want to do is hop into a warm shower.

Hope everyone had a fabulous Halloween!



Wednesday, October 26, 2011

Knock on wood

Hello everyone!

Quick update: Surprisingly enough, there is nothing wrong with my portacath. I thought for sure it was doing something bad, because of the excruciating pain I was getting last time I was in the hospital. I think it might have been a bad access, but there was no swelling. It's sooo hard to say. Anyways, it's working and I'm getting better by the day. I'm 9 days into my stay, and I get to go home at the end of the week. Just in time for Halloween. :)
My sister in law is a photographer, and she is having this Halloween studio shoot. Morgan and I are having some pictures taken, with our puppies. I'm going to get Panda an orange bandana, no costume. He's already festive with his b&w coloring. I on the other hand am being a bunny. I found these cute fluffy ears, and it doesn't require too much work. I'm going to do my makeup and hair, wear a cute outfit, and put on my ears. For the first time in a couple years I will be home, and NOT in the hospital. In stark contrast with last year, I am actually feeling GREAT! And although it's late at night, and I can't sleep because of all the screaming children, I feel so good. Tired, but good and happy.

Life is good right now. I'm going to savor every moment, and I'm going to live it like I have no tomorrow(even though I have lots of tomorrow's). The last couple months have just been horrible, and it's finally over. All of the really tough bits are done and over with - knock on wood - so it's time to move on.

I'm in so much pain tonight! I had my port reaccessed, and it's been sore ever since. As if that's not enough, my pleuritic pain kicked in, and hasn't left for the last 8 hours. I'm exhausted, and have almost been awake for 24 hours. Luckily I've had wonderful nurses all day. You just can't beat that when you feel like shit.

When my doctor comes in today, I'm going to ask him if I can go home on Friday. I REALLY want to get out of here. I have to start packing up our room up too. We are moving this coming month, and WOW we have a lot of crap. I will be doing most of the packing alone because Morgan will be at work. Believe me when I say, that it's for the best. ;) Nothing against my dearest hubby, but packing is not his strongest suit. But I'm willing to admit that that might just be my OCD tendencies talking.

Tonight I'm wishing I could go to bed with my husband, that I could snuggle with my puppies, that I could cook in my kitchen, and paint in my living room. I just want to be surrounded by the house I've lived in for the past 8 years. I've had a lot of great times in our house, lots of bad ones too. It's the longest I've lived anywhere, and I don't regret one second of it. 

Going to bed finally! Nice catching up with you. ;)



Tuesday, October 18, 2011

Crazy girl

Here I am once again...

In the hospital!

My last hospital stay was HELL! It was almost exactly like the one last October. Nose bleeds, surgery mishaps, pleural effusions... Well actually that one was new. Not that this is a surprise by any means, but apparently I am a FREAK of nature. I am so stressed out about having to go through all this shit, just to get IV meds.
I'm not going to lie, I went to a dark place for a month. Didn't really talk to anyone, I was just too upset. The last thing I want to do when shit hits the fan, is explain it to everyone who asks. Not that I don't appreciate them caring enough to ask, but I just couldn't do it. We all have our ways of coping, and getting through life's many obstacles. Don't worry though, I'm not hitting the bottle or anything. Although I have become very good friends with Seagrams. ;) A little whiskey never hurt anyone. In fact, it's often used to help with pain (in my case emotional, and physical pain) it really is a miracle elixir. 
I caught a cold a couple weeks ago, and am just now getting over it. Thankfully! Colds are the worst.

This transplant needs to happen. I'm going to keep going because that's what I do, but I'm having a hard time not going crazy right now. I had a phlebotomist come in to draw blood, and she poked me twice - didn't get any blood, and she blew my vein. After she left I was so upset I called my mom, and then cried really hard in the privacy of my own bathroom.

At the moment my breaking point is just around the corner. I know that I'll never turn that corner, but it's a little comforting to know I have the option. It's all about choices, and doing the best you can with what you have. In my case, it's a shit storm.

On a happier note, my husband has a great job. He's making money for us, like a husband should do. I'm pretty traditional on that front. I fully intend on staying home with my little kid(s) when the day comes. Which I'm wishing for every day - at least several times. Right now my kids are my dogs. I love them so much, it kills me being away from them. They are used to snuggling all day, because I've been home for almost the entire last month. I just play with them and snuggle with them all the time. They are the strangest, most loving dogs I have ever met. Besides Morgan's dog Rusty, who passed away last year. She was a gorgeous dog, who just loved Morgan with her whole heart.

Also, I'm missing a few people a lot...

1. My dad. I always miss him, and lately I wish he were here more than anything.

2. My aunt Rory. Words could never describe how much I love this woman. She is one of the strongest people I know. I wish she were here to take care of me, and love on me.

3. Jena B. My partner in crime, my love, and my soul sista. Wishing she were here to take my mind off of everything.

I'm more than satisfied with the people who are around, and I know that 2 & 3 are just a phone call away. But how do you even begin to describe how much you miss someone? I wish we could transfer feelings - with all the flavor and intensity that comes with them.

It's obviously late, and I do have to go to bed. Sorry about all the "shit" stuff. Sometimes there just isn't a better word to describe how crappy life is at the moment.

I love you guys. Thanks for reading my crazy ramblings. I'm pretty positive that most of this doesn't make sense. What can I say, I just took an ambien so I'm bound to say some stupid random things.

Goodnight everyone. I will try to keep you updated, but this first night as been grim and who knows what tomorrow will bring.


Tuesday, September 27, 2011

things suck.

The truth is, the last month has been sooo hard - and I don't have the energy to explain everything. But here is the basic simplicity of it all...

The surgeon placed my port in a wacky place.
My transplant doctor disapproves of it - WITH GOOD REASON!
I've had a lot of complications because of where the new port was placed.
AND, now I'm going to have to have it removed, and replaced.

We are moving soon.
I'm exhausted.
I'm grumpy, and sad, and don't really feel like talking to anyone.
(If you do talk to me, please don't ask me a million questions about the shit that's happening in my life. There isn't enough time in the world for me to explain it. I'd rather just get through it, and talk about it later. I know this is selfish of me to ask, I know that there are lots of people who care about me, who deserve to be in the loop... But, I can't be the person to keep you in the loop. I'm sorry. )
I'm absolutely miserable. This has been a really rough year.
I have my momma, my husband, and my twin to keep me sane and strong.
And I get to snuggle with my puppies all the time!

Life could be worse, but it's definitely NOT great.

Tuesday, September 6, 2011

Power Port time!

Okay, so I'm thinking that I want a power port.
With all my clotting problems, it would just be easier to get the cat scans and stuff with a power port. You can inject dye into it!! So cool, especially for me. :) I am very excited.

AND, to top it off - my twin is coming home tomorrow. She is honestly my closest friend, and I am so lucky to have her in my life. I LOVE YOU TWIN!

I have some rad socks to wear in surgery! 
Purple with pink Polka dots over grey with Pink stripes.

I'm nervous, but honestly I've been poked with needles way too many times in the last 6 months. I'm so tired of it, and my arms are all f***ed up. 


I'm gonna do this shit Mattera style! 
Balls to the walls, with a smile on my face, and amazing socks on my feet. ;)

I have my care team by my side, and a comfy bed to recover in. I'm SO set! Wishing I had more movies to watch, and books to read though. Blast! 

Have a good day, dear readers! 


P.s. Please don't be offended by my language. I have a bit of a potty mouth. Whoops!

Monday, August 29, 2011

No word, a building need.

I'm really hoping that they can schedule my port surgery soon. In the last few days I have managed to feel pretty gross. The mid 80 degree weather has me feeling all sorts of icky. But whatever, that will be addressed this week I'm sure.

I've been trying to keep myself busy, so I don't really have the time to dwell on it... AND what I came up with is making an Amazon wishlist. I have a running one for my kindle, so I can keep track of the books I want. But I discovered the wishlist button you can add to your toolbar, and I kind of went crazy. It also coincided with getting J.Crew's September issue in the mail. Ugh. Anyways, I thought I'd share a few of my highlights, and the link to my wishlist. (Totally NOT a "BUY ME SHIT!" tactic btw)

1. J.Crew - Brumpton bag

2. Hunter - Pink High gloss :)

3. Kate Spade - New York canvas Kindle case

4. Hollister Co. - El Morro jacket

5. Doctor Who - Season 6 Part 1 
You gotta have the Doctor around. ;)

Amazon wish list: Phee's Love
( I have a scrapbooking wish list as well, mostly because Amazon is sooo cheap!)

I'm working on another that's not an update about all the stupid crap. I'm almost done with it! Wahooo

have a good day my loves!


Friday, August 26, 2011

3 P's


The last couple days have been WONDERFUL! Yesterday Morgan and I hung out at the pool, had pizza at Nana's, and played apples to apples. Today, I posted some stuff on craigs list (please sell!) and am now painting/blogging. While I literally watch paint dry, I am on the computer editing photos and blogging. I'm seriously having a good week. It's so refreshing after the bullshit last couple of weeks.
I am super excited about the painting I'm doing, and I hope the guy who paid for it likes it. I had a week set back because I was in the hospital, but I've been in my little studio painting every chance I get. It's been so boiling hot though. Especially in the late afternoon! The only thing keeping me sane right now is iced tea, and a fan blowing directly on me. Whew!

I am VERY happy to report that I will be getting a portacath, and that it's only a matter of scheduling now.  :D

The Lovenox shots are horrible. Morgan is doing them for me. Lucky guy! I just can't do them on my own, the Lovenox stings and burns soooo bad going in, I'd never be able to do hold it still while doing them. I don't usually feel like a whimp, but these shots have me saying "Wait, wait, wait" like I did when I was 10.

Change of subject... August 9th was my 1 year wedding anniversary! I can't believe it's already been a year. It's been so fun!! Being married is one of the best things. Because I'm all about celebrating, I had a friend of mine take some anniversary pictures of us. We went to Sauvies Island to take the pictures, and they turned out GREAT! :D I hope you like them as much as we do.



Sunday, August 21, 2011

clots again???

Okay... Where to begin?!

2 Fridays ago I arrived at clinic to get my picc line dressing changed. When the nurse went to flush it, it wouldn't budge, and the line had blood in it. After attempting to loosen the clot for 15 minutes, we decided the picc was a goner and pulled it out. So, I don't have a picc line anymore.
The reason I am in this time, is because my arms, neck, and head started to swell. Similar to how they were when I had the clot in my SVC. All of the swollen areas were tender, and hurt a lot when any thing touched them. On Tuesday it was REALLY bad, and I was totally freaking out.  I wasn't really thinking with the fact that it could have been a clot from my picc line... So later that night I started coughing up blood. It wasn't that much, but we were getting ready to go to the ER anyways. When I just stopped coughing up blood. I managed to lay still the rest of the night. The next day I had a clinic appointment, where we all decided it would be best if I was admitted.

I had an ultrasound done on my neck/arms/chest, which showed I had a clot in one of the veins in my left upper arm. Then we did a CT with contrast, basically showed the same thing. Finally the Echo. There is NO clot in my SVC. Thank god!!!! Next question - What kind of access am I going to get for IV antibiotics?...
Well the ultrasound didn't show a promising vein for another picc line. So none of those. (yay) My only real option is another Port. (YAY) So, the surgeon who took out my last one, agreed to put in a new one as well. We are having all the discussions with all the different people and should have the surgery scheduled soon.

I am SOOO excited to get a new port. That picc line business is NOT for chumps. 6 months of showering with a bag over your upper arm, and laying on your other side, and not picking up anything over 5 lbs with your picc arm.

It's going to take a bit to schedule the surgery, so I'm going home today on oral antibiotics and Lovanox.

I get some summer days with my family and my puppies. Painting the night away after eating a dozen home made tacos, and a good swim! Hooray!

Monday, July 11, 2011

little little update

Going into the hospital tomorrow.

I will write an update when I get all settled. I've been so busy with the family reunion we just had, so I haven't been able to blog. I will get back in the swing of things, once I get back into present time. Lots has been going on, and I've had tons of thoughts I'd like to share with you.

I'm so relieved to be going into the hospital. I feel SO GROSS right now!! I need those antibiotics, and the relaxation. I'm past due.

Get back to you later!!


Friday, June 17, 2011

Tardis Blue, and an update

The Seattle trip was awesome! Just a basic 3 month check up with the transplant team up at UW. Everything is good, still listed, made it through the trip alright, and am focusing mainly on my health and transplant. I have great people in my life, who care for me and are extremely loving and loyal. It's the people who stick by no matter what, who are there for me when I'm sick (which is more than often) but are there for me when I feel good. I love them more than anything! Shout out to my family who are there for me everyday, through anything.
Anyways, I'm super tired but I wanted to do a little update before I went to bed.

Fill in the blank Friday

1. The last movie I saw was Shrek 4. I thought it was funny!

2. I want to go to bed, with a heat pack, a cup of apple juice, and my Panda Bear.

3. Surprises are fantastic if they are good and thoughtful.

4. The best accessory is jewelry. But not too much, you don't want to over do it.

5. My favorite warm drink is Ginger Peach Black tea, and hot chocolate.

6. My favorite cold drink is APPLE JUICE! I have an obsession.

7. Currently loving Doctor Who. But when do I honestly not love Doctor Who...? Never. I'm watching some episodes from the early seasons, and thoroughly enjoying them all over again. I just recently bough a Tardis blue tshirt. (note the tardis blue text!!)

Momma got my feeding bag ready, so I'm off to bed. I'm going to curl up with my baby bear, and some Doctor Who.   :D

Good Night!


Monday, June 13, 2011

I'm sorry it's been awhile.

I just don't know what to write about right now. I've started like 7 entries and haven't finished any of them. Though that fact is probably obvious because of my absence.

Everything in my life is going well. My health is doing the same normal thing. I'm listed now, so not a lot of exciting news there. I haven't had any dry runs, which I'm okay with. Married life is wonderful. Morgan got a job and is working part time. So he has a few days a week to write music, take care of me, and help with the house since we don't pay rent. Which is an important job Morgan has, but he only gets paid with loooove. ;)
The puppies are amazing. Panda is getting to be a little crazy. He's so energetic! Recently he discovered squirrels, which a couple days ago got him stuck in a tree. :P Fancy is sweet and weird as always. But I'm finding, that when it comes to my dogs I can't help but love them no matter what they do. They have become incredible companions, and fantastic entertainment.

I realized that I've talked about what I want out of my life a couple times, but I haven't ever talked about what me and Morgan want to do as a married couple. So I thought this might be interesting.  I've had my attention on this lately anyways.
Some of you know that Morgan and I are using this valuable down time, to map out our lives. We're figuring out what we want to do, where we want to go, what we want to have. It's amazing, and I feel so lucky to have a husband who's aspirations are so full of life. We are talking about college, music, careers, making a home, having babies - just EVERYTHING. That's not something we usually talk about with just anyone, because honestly it's OUR life. I've never lived my life doing things that others wanted me to do, or doing things based on other peoples negative opinions. What I don't want is for people to ASSUME they know what our life is like, and start throwing around their opinions that were created out of assumption. Frankly, if I followed the opinions of others even if it didn't feel right, I probably wouldn't be here right now. SO...I'm not going to start now.
What I'm getting at is this:
We are stong, no one can tell us we're wrong.
Searching our hearts for so long, both of us knowing.

If you recognize those words than you are probably a woman, who has at one point or another listened to Pat Benetar. Those words, how ever silly they might be in a song, are so accurate in this case.
Morgan and I, though we don't know everything, we know what we want out of life. We are planning for the future, and investing our time and our energy in the creation of the life we desire. Living with my parents, and having relatively no financial responsibilities is such a blessing. And I just want to say how THANKFUL we are to my parents who allow us such comfort. Of course we couldn't leave anyways because of this transplant business, but we like living with them. I definitely want to create my own home with the man I love, but I'd rather do that with a new set of lungs in my chest. We're just going to have to wait, and until then, we are going to be damn righteous about our lives. I'm very confident that we can work our stuff out with little help from anyone.

I know it's been over 2 months since I posted, whoops! But honestly, nothing interesting has happened. Ever since I got listed things have been kind of boring. I've just been waitin' for a 206 area code to call me. Speaking of 206, we're in Seattle right now for a transplant clinic appointment. We had a lot of fun last night. It's just me, mom, and Morgan up here this time. But we always have fun when we're together. Morgan is always funny, Mom is just hilarious - most of the time on accident, so there is plenty of laughter on our trips.
I have to go get ready and pack up, we have to check out soon and Morgan is still asleep. I think I'll play "you're the one that I want" till he wakes up. Sound familiar Jena? It was December of 1963.....

Totally sending you love!


Saturday, April 16, 2011

Long overdue blog

I've been out of it this last week. I guess I underestimated the extent of my exhaustion. I finally finished writing this blog. A major thing happened this week - on Monday.


It happened. FINALLY. I'm so overjoyed and excited. Of course I'm nervous too, but I'm not going to let my nerves take root in my head.

I have been having a good time catching up with all my nurses here at DCH. I could not ask for better nurses. I'm feeling a bit nostalgic, because soon I won't be able to see these people who have been a part of my life for the last 15 years. I'm so grateful for all of the great times I have had here at DCH, and even the bad ones. I have formed some very strong bonds with these people. They are my family! I'm so lucky to have them in my life. :)  I LOVE YOU GUYS!!

Okay, so just in case you're wondering... I've been one sensitive cry baby this week. Of course I do a lot of it in private. I'm just a little overwhelmed by how thrilled I am, and how relieved I am that I'm through the worst of it. I don't think the actual transplant will be as unpleasant as all the crap I've had to do in the last year.
So here is the long overdue blog. I hope you enjoy it. Gives you a little window into the current state of my soul. ;)

I read somewhere that we gain a lot of our life experience through pain, whether it’s physical or mental. As a CF patient I can totally agree, but as a pre-transplant patient – good grief it’s my life! This has not been an easy road to take, and I guess I can kind of see why some cf patients would opt not to go this route. It’s scary, and it most certainly can be painful (physically and mentally). It was the scariest decision I’ve ever made in my life, while simultaneously being the best one.

I’ve always been pretty self aware, and in touch with my body which really aided me throughout my life. But going through this process was like going through a crash course on self awareness and spirituality. Transplant plowed through all my fears, and boundaries. I found out I can do anything, literally, and one day I really understood that this surgery is not only going to SAVE my life, but it’s going to GIVE me a life that I thought I could never have. Someone is going to save my life without even knowing me, in spite of losing a loved one. It’s interesting because this last year has been one huge awakening for me. I learned that the relationships we have with people, the connections, and all the love is what really matters in this life. One of the most intimate relationships I’ll ever have is going to be with a person I don’t even know, or at least part of a person I don’t even know. It’s so remarkable that through someone’s death another person can live. I feel so lucky to know firsthand how utterly amazing it is. This whole process has been so deeply intense, and has opened my eyes to a very different and beautiful world. I’m seeing some amazing things these days. 

The thing I really want to focus on, because it’s the most meaningful to me, is the profound beauty that has come into my life because of transplant. The decision I made is by far the best decision I’ve ever made, and I’m so thankful for everything I have gone through. Some of it was really shitty (excuse me) but through all of this I’ve just become stronger. I’ve learned so much about myself in the last year, but I think I’m also more whole as a person. All the ups and downs have humbled me beyond belief. I can only look back on this last year with reverence. I believe that things happen for a reason, and they happen when they’re supposed to – when we’re able to experience them.

When I was little I used to have dreams that I was running through a park or a field, breathing deeply and not coughing. I remember the sadness and ache in my heart when I woke up because I thought I’d never get to experience that. I never thought I’d be able to breathe deeply anywhere but in my dreams. Funny how things work out in life, the thing I wished for most as a child was to be able to live a long life full of deep breaths. I just didn’t know it would work out, and that I’d have to get a lung transplant to make it happen.

Here I am a year after making my decision to get a transplant, listed, waiting for new lung so I can run and breathe in real life. 

I also want to thank EVERYONE who has prayed for me, thought good things for me, encouraged me, done anything nice for me etc. It's your love and care that helped me get through the last year. Without all the love in my life I'd be lost. So thank you! Know that even if I didn't reply I sent you good thoughts too.

Cheers to LOVE & LIFE!


Saturday, April 9, 2011

Been a little too long

I've said it before and I'll say it again... I am a horrible blogger. The 30 day thing was way too much when I came home. I didn't anticipate not being able to blog. I think it's referred to as writers block? Ha! Just kidding I know all about that. I bet you didn't know that I took a creative writing class in high school. ;)
I'm not going to apologize for not keeping up with my blog, the only thing I can really do is write a blog worth the wait. So, following this post will be a new blog. This one is just to update you a little bit.

A couple weeks ago I went to Seattle for my UW appointment. My Dr told me that the Echo I had done looked good, and they felt really good about listing me. They still had to have a committee meeting and make sure everyone was on the same page, and get some labs from me. I had some paperwork to send to them this week, and I have to do another blood test, but I'm almost there. I'm starting to get a little nervous, I can't believe this is actually happening. Even though for the last year I've been planning my life post transplant, I'm having a hard time imagining getting the call and waking up with new lungs.

I'm going into the hospital on Monday for a week - 10 days. We'll see what happens, I'm starting to feel a little shabby. Picc line is still working perfectly (knock on wood) so I'm very thankful for that. I'm used to it now, and actually really like it. Taking a shower is a little bit of a pain, but I find it actually makes my life easier. I take things slower, so I don't get as wiped out by getting ready. Excited to go in and have some nice relaxation time, some blogging time, and some me time. :)

I promise you all that I have a fantastic entry that is just waiting for some attention and editing. I'll probably post it on Monday or Tuesday. Followed by many other entries! Blogging is heaven sent while in the hospital. Honestly, the internet is amazing!

Running errands for the hospital today, so I will catch you up on Monday or Tuesday. Can't wait!!!



Monday, March 7, 2011

3 days...AND an update

 I have so many things I want to blog about, but I find myself unable to post anything my first week out of the hospital. I think I might have finally caught up on my sleep. My picc line stopped being such a hassle for me when trying to fall asleep, and I'm starting to find my independence when getting ready for the day. My arm has been really stiff, but it's finally starting to release a little. It's not that swollen anymore, and it's not tender anymore! YAY! The last person to change the dressing did a horrible job, after just 3 days it's starting to get crazy.
I'm home!!!! After my hospital hangover truly goes away, I will be able to update you on all the happenings of my life. My life is far less interesting out of the hospital. You'd think it was the opposite way, but it's not. I came home expecting my Jena to be gone, but didn't really understand what that meant until I saw all of her things gone. :( I MISS YOU JENA!!! I'm a sad little Phee without my JBear.
So here are the last 3 days I've missed, I'll try and be better about this. I have 10 days left!!!

 Day 18 – Something you crave a lot.

 Lindor dark chocolate w/ Raspberry deliciousness in the center. Mmmmm good!!

Day 19 – Another picture of yourself.

 This is a picture I took of myself 2 summers ago. I desperately miss the sun.

Day 20 – A picture of you last year and how you’ve changed since then.

Just for the record, my entire blog documents the changes in my life during the last year. To renew my own knowingness of them I am going to write it out now.

A year ago I had just come into contact with the scary prospect of transplant. I knew my condition was worsening, and would continue until my ultimate demise. Obviously I wanted to avoid that, so transplant was my only option. I thought about it constantly for a week, and I learned everything I could possibly learn. I had been against it for years, so it took awhile for my doctors to REALLY understand that I was serious about it. I've done a lot of changing since Morgan came into my life. Now, I would never want to leave him, not even in death. So, I had to grapple with that when I was thinking about transplant. I had to come to terms with the possibilities if I got a transplant, or if I didn't. But, death would be guaranteed if I didn't get a transplant.
I did the transplant workup in April/May, and I've been trying to get on the list ever since. Obviously I've had some complications in that arena. After a failed surgery, and a successful surgery I'm finally ready to be listed. Through all the (excuse me) shit I've been through in the last year, I can comfortably say that I'm not sure I knew who I was before I made this decision. My attitude about life has changed in some interesting and drastic ways. Where I was living for the present before, I am now living for the future. Even though I was very interested in my future, it wasn't EVERYTHING. Day to day was my life, experience to experience. But it's so much more now! My life is so incredibly full. I have love and hope surrounding me wherever I go, no matter the state I'm in. There is something weird that happens to you when you know that being sick isn't ALL there is in life. Now, I'm living with the knowledge that I won't always feel like a massive pile of sick that just got flattened by a semi. Life is much happier now, but at the same time it's not. Like anything great and fulfilling in life, you really have to work hard for transplant. It will consume you if you don't balance it all out.

But, WOW, I've changed so much since I became a wife. My life revolves around Morgan, in a very strange way that you would only understand if you were married. I'm so incredibly happy to be with him every day, and even though everyday isn't a fairytale by any means, we have so much fun together, and our life together is so full of love. I am so thankful and blessed to have him in my life as my husband and my best friend!

You know, after sitting here for awhile, I just now realized that there isn't one way my life hasn't changed in the last year. Even my style and hair is different. The ripple effects of deciding to get a transplant is so interesting to look at from where I'm standing now. I am so close to it that I can taste it!
The life and future I've been dreaming of is just over the next hurdle.


I'm going to a Jokers & Jacks show tonight. (The band my hubby plays in) It will be the first good venue I've been too. I can't wait to see all the new stuff they've been working on. Even as a wife there's very little musically speaking, that I'm privy too.

Also, I told you I would post a picture of my new haircut....

I guess this kind of was an update in the end, at least transplant wise. You might of noted the fact that I'm not listed yet. UW wants me to do an Echo to get find out the new state of my heart. I'm doing that tomorrow. I have an appointment in Seattle later this month, so I'm pretty sure that I will get listed this month. Which is interesting because it's exactly a year since we started this whole adventure. I'm thinking next year this time, let's go for having been transplanted! Yeeeeaaahhh!

I hope this blog finds you all well and happy. 

Cheers to love, happiness, and the endless possibilities that the future holds.


Friday, March 4, 2011


I'm playing catch with my days this post.
I don't have a long update for you right now, but I will tell you a couple things.

1. I'm home from the hospital. I did great on my lung function test. A+

2. Finally get to satisfy my home cooked meals craving.

3. Sleeping in a bed with a picc line and another person is a lot harder than I thought.

4. The first week is always the hardest. It's like having a hospital hang over. I'm still playing sleep catch up, and yes naps are included in that equation.

5. I got a hair cut!!!! And it is soo cute. (Will post pictures soon!)

6. My puppies are AMAZING!! I missed them, and they missed me. :) Living in perfect harmony once again. 

Day 15: Something you don’t leave the house without.
My inhaler, my phone, and some pills to get me through anything. Pain, indigestion, and enzymes for eating.

Day 16: Your celebrity crush.
CHRIS PINE!!! Star Trek is one of my top 6 favorite movies. I could watch it over and over again. And it's not just for the awesome special effects, and witty dialogue... Funny enough I was looking at pictures of Chris Pine, and a saw a little bit of Morgan there. Brown hair, thick brows, lush eyelashes with dreamy eyes, and hello....Sexy man scruff! Not to mention star quality. :) Morgan is my Chris Pine. I'm sooo happy.

Day 17: A photo of you and your family.

This isn't the entire crew, but most of us are here. This was at my wedding. I'm such a lucky girl! I have a very large and caring family. :)

I will update you more later.... I'm so tired and I have to go to bed.



Monday, February 28, 2011

Day 14 / little update

Day 14: A tv show you are currently addicted to.

I picked SKINS for this one. If you would have asked me several months ago, I would have said Doctor Who. I will ALWAYS love and be obsessed with the friendly alien doctor, who travels through space and time in a deceiving large blue police box. But as I've seen all the episodes to date, there's nothing new for me to obsess on. Ask me this again in a couple months, and I will say Doctor Who, as the new season premieres sometime soon this year. :D YES, I do realize I'm talking way more about Doctor Who than I am about SKINS.
SKINS: British TV show about teenagers who are for the most part not parented. Some of them do drugs, most of them have sex, but the whole show is a blast to watch. I'm 21, so I'm definitely not impressionable like I would have been say 6 or 7 years ago. I mean, I'm MARRIED people, to a rock god none the less. (thankfully he's not one that does drugs!) So anyways, I have a weakness for teen dramas that involve all of the above, and lots of angst. I first saw it on the Netflix play instantly, and when I started watching it last summer I just couldn't get enough. I'm so happy series 3 popped onto the play instantly list. I'm currently getting series 4 via snail mail. Not fast enough! Anyways, I LOVE IT! And if you have any interest in British tv, and teenagers full of angst, you should put in on your queue.

Skins 1 & 2

Skins 3 & 4

I love this show! Highly recommend it!!

On a completely different note......
I have lung function tests tomorrow, so I could be going home soon!!! YEEEEEAAAAAAHHHHH!
I'm so full of energy, I feel so great, and I just want to go home already. I'm ready!!!! (in the words of Spongebob Squarepants)

Ode to Doctor Who (Abby who is my fellow Doctor Who lover)

Love, love, and more sonic love,

Sunday, February 27, 2011

Day 13

Day 13: Your favorite musician and why.

I'd think this one is very obvious if you know me at all.

Musician: Morgan May

Why: He is a very talented song writer! I have witnessed his song writing process, and I know for sure that he never sends a song out that he doesn't think is perfect. He writes with all his heart, and really lays it out for the world to see. He is brave. I am also married to him, so I am bound to listen to some of his music, and what I've heard is music I could listen to all the time. As a person....Well I know this man like I know myself. He has fantastic character! He has a kind of sense of humor that is really rare these days. He is an honest and very loving man. All those things are so admirable in someone who is, someday soon, going to be a well known artist. Because of those things, when I read what day 13 was, I didn't have to think about it. I instantly knew who I was going to put down. And, WOW, I love this musician more than I can even say!!

Oh yeah........Plus, he's a super badass!!!!

P.s. Go to to listen to their awesome music, look at pictures, find out where they are playing next, etc.

I loved posting  Day 13!


Day 11/Day 12

Day 11: What's in your makeup bag??
I'd tell you, but I think it's something you have to see to believe. Without intentionally do it, I managed to have ONLY M.A.C. makeup. Well, aside from one Dior eyeliner pencil, and a couple of the brushes I use. I have more eyeshadows than I know what to do with, but I suppose there's one for every mood. :) My makeup is divided into 2 bags; One for face powder and cheeky powders, and one for eye makeup and lip stuff. I only use MAC Cremesheen glass because it's not sticky!! I hate wearing a gloss that's like fly paper, when I discovered the Cremesheen I never turned back. In addition to that, I have never used an entire tube of lip gloss until I found it. It's incredible stuff!!!
Actually, I don't know if you knew this about me, but I am in LOVE with makeup. It's my thing!
This isn't all of it, but it's what I brought with me to the hospital.

Day 12: A photo of the city you live in.

I live in Portland. I moved here when I was 5 years old. Mom packed up our BMW in 1995 and we moved into a tiny duplex in SE Portland near the Aladdin theater. We've moved 3 times in Portland, and are most likely moving for a 4th time this spring or summer. :)

Portland is and will always be my home.

Little update: My headache was completely gone all day! And for once since the surgery my wounds hurt more than my head. Crazy business! I was so relieved and happy all day. I am full of energy, I feel so good, and I don't feel swollen. It's a freaking miracle. All day I've been talking about transplant business, but I don't think I've realized yet just how close it all really is. I am so jazzed!!
My mind is racing tonight. I am having all these ideas, some big, some small but I'm having to write them all down because I just can't keep up.
I'm feeling really good, and I'm hoping to go home either Tuesday or Wednesday. I have PFT's early this week, and I'm hoping to kick ass!!!! :)

Love love,

Saturday, February 26, 2011

I'm back!

Hello everyone!!!

Well I'm back to blogging. I hope you enjoyed my moms blog, I know I did. She's just the sweetest little momma ever.
So the surgery happened! It all went well, and I am alive and happy. I should be listed soon. I'm not entirely sure how that's going to work out. BUT, I am so extremely relieved that this is over and done with. On to transplant!!!
Post surgery I'm having a little bit of a rough time. The blood flow in my body has changed drastically, and I guess sometimes that can give you headaches, which I currently have. I was also having some post surgery fevers for the first couple days of recovery. I'm better now, although I'm still experiencing some headaches, they are not as bad as before.
It's so weird that I don't have a port anymore!

On another note.... I am SO THANKFUL for all of the support and love that was given. It really does make a difference in my healing process. All of you are amazing and deserve some sort of award, but all I can give you is heartfelt thanks and love in return. :) Please know that it means the world to me knowing I have people behind me rooting me on. This journey towards transplant has been life changing in so many ways. Mom and I were talking about it earlier, joking around, and I said that we had "won the battle but not the war".
She replied with "We've won many battles, and we're going to win the war". She is so RIGHT! I have every intention on following through with everything I've talked about. It's all going to happen. Your support is a big part of that. Like every sports team in America, I too need cheerleaders to motivate me to win the game. Just know your love is felt, and it's appreciated sooo much.

I have PFT's some time early next week. My picc line is working, but my arm is a little swollen and pretty tender. There's some insertion bruising. Ew! I'm trying to be nice and communicate with my arm, so my picc stays in.

So I'm like 4 days behind on my 30 day thing. It's kind of ridiculous. I'm going to post 2 right now, and 2 later today when normal people are awake and roaming around. Morgan will be busy all day tomorrow, so I will be by myself/with my mom/or with my sister in law (who is also my new best friend)

Day 9: A photo of the item you last purchased.

Honestly this is the last thing I remember that I have a photo of.


Day 10: A photo of your favorite place to eat.

That's tough. I have several places that I frequent but none are really my hands down favorite.
I go to Pastini Pasteria a lot. I also go to Outback I love to go to Mio Sushi, but I don't go there enough. I guess the favorite I have that I don't go to often enough is Stanfords. I absolutely adore it!!

Okay there you go. Updates galore! I have to go to bed. I'm sleep deprived, but it's so hard for me to sleep these days. With the headaches, and getting used to my picc line it's a freaking disaster.

Love and more love to all of you!


Friday, February 25, 2011

fill in the blank friday / blog mojo

1.   I am currently obsessed with ..  Heat packs for my picc line, card games, my pink camelbak (picture below), spending time with my mom and Morgan.

2.  Today I am feeling pretty subdued. I'm feeling the itch to go home, but I honestly feel pretty crappy because of these headaches. 

3.  The age I am is 21 - Went to one seedy bar and , had a drink at Mcmenamins. My outings as a 21er are not impressive at all!!

4.  My favorite place is home. target. michaels. and borders.

5.  Something I have been procrastinating is working some magic on my picc arm. And posting on my blog.

6.  The last thing I purchased was Starbucks. Strawberry Blueberry yogurt, and a chocolate milk. :)

7.  The thing I love most about my home is the people, the puppies, and the family room. I love that I can hang out in any room and no one cares. I like to spread out with all of my stuff.  
A real update is coming shortly. I wanted to have pictures edited for your viewing pleasure. I haven't done a fill in the blank friday in a while though, so I figured this would be a good beginner. 
Stay tuned! Check back in an hour or so, if you're still up. I am a total night owl, I stay up late...


Tuesday, February 22, 2011

Day 8 - Truly Amazing Day!

Day 8 - A song to match your mood
Phoebe's choice was:  "Eye of the Tiger"

Hello! This is Amy, Phoebe's momma.  I know Phoebe had wanted me to post updates during the surgery, but I couldn't take my attention away from a waiting room full of family who were also waiting.  Wait seems to be the order of the day.  Luckily, we didn't have to wait as long as we thought.  Why were we expecting the longish wait time?  You should have heard one of her surgeons during a consult...  

In prior consultations with Phoebe's surgeons they had discussed her upcoming surgery as a "rock fight from the start",  "I can't tell you how successful we are going to be", "I wish I could give you some odds, but we really just won't know anything until we are there", as well as "we booked a long time for this surgery".  We weren't bowled over by their confidence, but we knew that they were the "prepare for the worst and hope for the best" types.  For the last few months I haven't been able to get my attention off of the upcoming surgery and how significant an event it would be.  What a crescendo of anticipation!  This would be a death sentence or an opportunity at a new life with new lungs (to be listed for a double lung transplant).

There has always been one thing I could count on, no matter what, and that is Phoebe.  She has this will that forces the universe to simply obey.  She has overcome the odds so many times she would have outlived a cat times twenty.  She is the strongest willed person I know. Examples:  Day before yesterday she said that she would enjoy some fresh cut flowers in her room.  That night her cousin Jena came to visit with an elaborate bouquet of exotic blooms.  Today during surgery a lovely bouquet of pink tulips arrived from a dear family friend wishing her luck! Now, I realize these aren't dramatic life changing events.  We've had those too, such as the time the docs were hugging me because they thought Phoebe was going to bleed to death from a burst blood vessel in her lung and her only chance of survival was to stop the bleeding on her own, or the time she told me that what she wanted to do about her extremely rare bacterial infection was to get rid of it and give her docs the finger for giving a less than optimistic prognosis of 6-12 months (NAILED IT!).  I could go on, but this girl has been living against all odds from the very start.  I'm surprised she hasn't cured herself of CF, but maybe she still has a few aces up her sleeve.

Today was the biggest challenge yet.  Not only did a brittle and tired old catheter/port have to be removed without breaking apart and dispersing into her bloodstream, there was a huge clot and a completely occluded and damaged SVC that needed to be repaired and then stented.  Neither of these two things were easy fixes. There were potential pitfalls and worse case scenario possibilities galore.  

It took a few hours and then casual as can be, the surgeon steps out of the OR to let us know that "Phoebe is doing well.  The surgery was a success." and that he's "really glad it all worked out, it was really cool."  I was stunned.  I asked him what the down-side was.  He said "'s all good."  I asked him about being listed for transplant.  He said "We did everything they asked for."  Easy breezy, lemon squeezy.  And that's how our story ends.  Just the way Phoebe said it would end.  I'm wondering why I was worried in the first place.

Why worry?

I don't know about you, but I am a big Phoebe fan.  HUGE.


A sincere and heartfelt THANK YOU to Phoebe's surgeons, who may not know it, but they saved a life and many hearts today.  And lots of LOVE to EVERYBODY who was out there sending Phoebe prayers, positive thought, light, love, etc.! 

Day 7/ Update

Day 7 : Your dream wedding

Well I had my dream wedding last year. I love everything about our wedding. We had so much fun!!

We had our dream wedding on August 9th 2010.
Once I get all the pictures from our wedding I'll have to do a whole run through for you. Our wedding was so much fun. I've heard from a lot of people that it's the funnest wedding they've ever been too. :) We made an incredible play list and made Cd's for all of our guests. The whole thing was very memorable!

So, I'm guessing you want to know how the picc line placement went? Well...... It actually was okay. 
It did hurt, it was uncomfortable, and it has been sore all day since it was placed. BUT, Perfect placement, it works, and I am not getting swollen from using it! We are using the picc line over my port now, and it seems to be working out. :) 

Here are a few pictures my friend Abby took of me. 

My sweet little Abby brought me some yummy KFC for dinner. I am so lucky to have such a great friend. I love my Abby! <3

I'm having surgery at 12 pm! I'm a little nervous, but I am soooooooo 100% positive that it's going to happen this time. I want to be listed RIGHT NOW! So I'm going all out. 
Balls to the walls!!! 

My mom will be doing a guest blog tomorrow, and possibly Morgan if he decides he wants to. 
She will be giving updates on my surgery, and most likely do something silly. 

I hope all of you are doing well. Take some deep breaths for me. I'm on my way to healthy lungs!

Love, Peace, Breath, and Life!